I'm so tired. My whole body hurts from not sleeping.
We are exploring a solution to Eleanor's overnight hypoglycaemia (we give her a double dose of cortef at bedtime), but it's hard to tell if it's working because she developed a cold. She is back up on her high dose of steroids around the clock to avoid a hospital stay, and she is Hulk-Smash-ANGRY all the time. I've tried to curb her activities so we don't infect others and she can recover, but she is past the point where our house is interesting. She climbs all the furniture, throws her toys around and then proceeds to climb on me. And scream in my face. And pull my hair. It is super fun.
When I awoke to the dulcet sounds of her screaming her head off at 3:55 this morning, I couldn't contain it anymore. I had an all-out, "WHY ME?" sob-fest as I tried to rock her back to sleep. It all seems so futile. If we double her steroids, she wakes with 'roid rage. If we keep her steroids level, she wakes with dangerously low blood sugar. So our next option is cornstarch. We have to feed her cornstarch before bed and this might solve all our problems. Seriously endocrine? This is your best solution?
So I feel worn out. Worn down.
Exhausted doesn't even begin to cover it.
This is just our reality now. We will have to figure out how Kris can do his job and I can get through the day with her while we exist on very little sleep. And I curse it! I hate it! I have never been very good without sleep and I feel selfish and protective over that aspect of my life. My body needs REST! And that is where the shame comes in. I can wake at 4 to a daughter who is in relatively good (albeit complicated) health, or I can wake at 7 and be like so many parents we have met who have lost their children. It's like that expression "I'll sleep when I'm dead", but much, much worse.
Ugh.
It's 8:30. I am going to bed and praying that tomorrow is better.
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